Caregiving

Leslie Kernisan new headshotA friend called me the other day: he is moving his 93 year old father from New England to the Bay Area.

This is, of course, a relatively common scenario: aging adult moves — or is moved by family — to a new place to live.

Seamless transition to new medical providers ensues. As does optimal management of chronic health issues. Not.

Naturally, my friend is anxious to ensure that his father gets properly set up with medical care here. His dad doesn’t have dementia, but does have significant heart problems.

My friend also knows that the older a person gets, the more likely that he or she will benefit from the geriatrics approach and knowledge base. So he’s asked me to do a consultation on his father. For instance, he wants to make sure the medications are all ok for a man of his father’s age and condition.

Last but not least, my friend knows that healthcare is often flawed and imperfect. So he sees this transition as an opportunity to have his father’s health — and medical management plan — reviewed and refreshed.

This last request is not strictly speaking a geriatrics issue. This is just a smart proactive patient technique: to periodically reassess an overall medical care plan, and consider getting the input of new doctors while you do this. (Your usual doctors may or may not be able to rethink what they’ve been doing.) But of course, if you are a 93 year old patient — or the proxy for an older adult — it’s sensible to see if a geriatrician can offer you this review.

Continue reading “What PHR Should I Use? It’s Complicated.”

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Here’s a design approach that I really, really dislike: the scrolling wheel that is often used for number entry in iOS apps:

I find that the scrolling wheel makes it very tiresome to enter numbers, and much prefer apps that offer a number pad, or another way to touch the number you need. (Or at least decrease the number at hand in sensible increments.)

You may think I’m being too picky, but I really think our ability to leverage technology will hinge in part on these apps and devices being very usable.

And that usability has to be considered for everyone involved: patients, caregivers, and clinicians.

Why am I looking at an app to enter blood pressure?

Let me start by saying that ideally nobody should be entering vitals data manually. (Not me, not the patient, not the caregivers, not the assisted-living facility staff.)

Instead, we should all be surrounded by BP machines that easily send their data to some computerized system, and said system should then be able to display and share the data without too much hassle.

But, we don’t yet live in this world, to my frequent mild sorrow. This means that it’s still a major hassle to have regular people track what is probably the number one most useful data for us in internal medicine and geriatrics: blood pressure (BP) & pulse.

Why is BP and pulse data so useful, so often?

To begin with, we need this data when people are feeling unwell, as it helps us assess how serious things might be.

And of course, even when people aren’t acutely ill, we often need this data. That’s because most of our patients are either:

  • Taking medication that affects BP and pulse (like cardiovascular meds, but many others affect as well)
  • Living with a chronic condition that can affect BP and pulse (such as a-fib)
  • All the above

As we know, the occasional office-based measurement is a lousy way to ascertain usual BP (which is relevant for chronic meds), and may not capture episodic disturbances.

Continue reading “An Example of Bad Design: This App’s Interface for Entering Blood Pressure”

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I assume by now that you’ve heard the news: Google wants to tackle aging. Specifically, they announced this week the launch of Calico, “a new company that will focus on health and well-being, in particular the challenge of aging and associated diseases.”

Because, says Larry Page, with some “moonshot thinking around healthcare and biotechnology, I believe we can improve millions of lives.”

“Can Google Solve DEATH?” shrieks a TIME cover.

Google’s goal, it seems is to find ways to extend human lifespan and essentially stave off aging.

Coincidentally, on the same day Physician’s First Watch directed me towards this NEJM editorial, announcing that NEJM and the Harvard Business Review are teaming up on a project on Leading Health Care Innovation.

Here is the paragraph that particularly caught my eye:

“The health care community and the business community today share a fundamental interest in finding ways to achieve higher value in health care. The ultimate objective for both communities is to keep people healthy, prevent the chronic illnesses that consume a large fraction of our health care dollars, use medical interventions appropriately and only when needed, and create an economically sustainable approach to the delivery of health care. While we want to foster innovation and novel therapies against disease, we also recognize that, whenever possible, prevention of disease before it is established is the better solution.” [Emphasis mine.]

And therein lies the rub. Whether it’s Google or a high-powered partnership between NEJM & HBR, everyone is enamored of prevention and innovative cures.

Let’s prevent those pesky chronic diseases! Let’s cure aging!

Ah, spare me.

Continue reading “Who Will Solve Healthcare For Our Parents And Grandparents? Probably Not Google.”

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Dementia is a chronic disease of aging that robs people of cognitive function, leaving them unable to tend to even the most basic activities of living. But demented persons can live for many years, incurring long-term care bills that can leave surviving spouses impoverished and estates depleted.

In a study published recently in the New England Journal of Medicine, my colleagues and I reported that the total costs of paying for care for seniors with dementia in the United States are expected to more than double by 2040. Medicaid pays these costs for the poor, and some people have private insurance. But for large numbers of elderly Americans, dementia brings not only human suffering but financial ruin as well.

Designing and building a program to protect Americans from the cost of dementia care is a daunting and expensive task, one that probably cannot be accomplished without the help of the federal government. The federal government has broad experience in creating health safety nets and has been expressing concern over the state of the nation’s long-term care systems for some time now. If Congress and the administration need a reason to act, our numbers on costs can provide it.

Currently, some 15 percent of Americans 71 or older have dementia. That is about 3.8 million people; a large number to be sure, but one that will pale by comparison to the 9.1 million expected to be suffering from the disease by 2040.

Our report, The Monetary Costs of Dementia in the United States, estimated that in 2010 Americans spent $109 billion for dementia care purchased in the market place, like nursing home stays. Factoring in the costs of informal care—provided by family members or others outside of institutional settings—the total cost of caring for dementia patients grew to between $159 billion and $215 billion.

Continue reading “The Cost of Dementia: Who Will Pay?”

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Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.

Continue reading “Truth At the End of Life”

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Do they need a PET scan to confirm the presence or absence of amyloid plaque?

More importantly, would doing such PET scans make meaningful impacts on patients’ health?

Those are the questions that a Medicare expert panel recently considered, and their impression, after carefully reviewing lots of high-quality research, is that we don’t yet have evidence supporting the benefit of using the PET scans. Unsurprisingly, some experts disagree, including a working group convened by the Alzheimer’s Association. This group of experts reviewed the evidence and common clinical scenarios, and concluded that in certain select situations, use of the PET scan would be appropriate. (See their guidelines here.)

As someone who evaluates many memory complaints, I’m certainly interested in Medicare’s inquiry, and in whether they’ll decide to cover the scan. (The NYT’s New Old Age Blog has a nice summary of the debate; a good read if you haven’t seen it yet, esp the comments.)

Also, I blogged last fall about how I thought the new scan could and wouldn’t help clinicians like myself evaluating cognitive complaints, especially in those who likely have early dementia. In particular, I commented on the difficult period of uncertainty that we often go through, as we wait to see if subtle problems progress or not.

Would the PET scan meaningfully help with that period of uncertainty? Hard to say, and it hasn’t yet been tested. I myself think that this period of uncertainty can be pretty hard on families, but measuring this burden is tricky. (Much easier to measure hospitalizations and utilization!)

I also suspect that it’ll be hard to prove benefit from “knowing earlier,” in large part because our healthcare system is currently so poorly equipped to meaningfully help people with a new dementia diagnosis.

Which brings me to the part of this story that has me annoyed.

Continue reading “The Four Things You Should Absolutely, Positively Do For Somebody at Risk of Developing Alzheimer’s”

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I found out this past weekend that the VA will be making clinician progress notes available for patients to view on the MyHealtheVet portal. In other words, the VA is going OpenNotes. (Note: I was a primary care provider in geriatrics clinic at the San Francisco VA from 2006-2010.)

My first reaction was to be impressed by this bold progressive move.

My next reaction was to feel mildly relieved that I’m no longer a PCP there.

Now, it’s not because I’m against transparency in healthcare, or am suspicious of patient engagement, or feel that patients shouldn’t see their health information without the assistance/gatekeeping/interference of a clinician. Far from it.

It’s because in my own VA practice caring for WWII vets, I used to frequently document certain concerns that would’ve been a bit, shall we say, awkward for the patient to see. Reading about these concerns would’ve quite possibly infuriated the patient, or the caregivers, or both.

So whew, I find myself relieved that I don’t have to figure out how to document (or not document?) these concerns.

Instead, I’ll get to see how my friends at the VA handle these issues.

Wondering what they are? Ok, I will tell you but shh … don’t tell my elderly patients that I may be considering these topics as I care for them.

Six awkward concerns in geriatric primary care practice

· Possible dementia. As a geriatrician, I focus on an age group that has a high incidence of dementia. Which means that when someone starts to tell me odd stories (concerns related to poison are a popular theme, as well as reports that someone is stealing things repeatedly), I start wondering about possible dementia. Ditto if he or she starts floundering with the medications, or starts having other difficulties with IADLs.

Why it’s awkward: Patients and families really hate it when I bring up the possibility that there might be dementia. Many find the possibility of a disease such as Alzheimer’s truly terrifying, both because it’s perceived as a terrible disease, and because they worry about having to leave their homes or otherwise losing their independence. Note that if I’m considering the possibility of dementia, I usually let the patient know during the visit.

Continue reading “Six Awkward Concerns in My OpenNotes”

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I would like to introduce our newest regular contributor, Al Lewis. Some of you might recall him from his guest-postings, sometimes offensive, usually controversial but always based on both fifth-grade arithmetic and principles of economics, two subjects that he respectively took in fifth grade and taught for two years at Harvard.

Al is asking for a tiny bit of help from us, which is to go to his ALS site and “like” it and maybe add a facebook comment.   He is trying to get CMG Marketing (the official licensing contractor for Major League Baseball) to sell Lou Gehrig jerseys to raise money and awareness for ALS.  Increasing the popularity of that site increases the likelihood of his getting CMG’s attention with his fundraising idea. -  Matthew Holt

It occurred to me that I have yet to post my own story in detail, and some of you asked me to do that after seeing my wedding photo.

Janet and I had dated for a while, and though we had broken up, we had become more like “besties” when she started to feel that something was amiss.  I (and other close friends) took her to several doctors to try to discern what was wrong.   I know many of you experienced the same thing with your loved ones, where you had to visit multiple doctors before getting a diagnosis.   Then came the day — and no doubt you had a similar day too — when you finally get the definitive diagnosis.  The Mass General neurologist, Dr. Cros, had very thoughtfully scheduled this visit as the last one of the day, so that the four of us there could be in his office into the evening, asking questions, holding back tears, cross-examining him to make sure we hadn’t overlooked any possibility for treatment, even something in early-stage clinical trials, with mice even.

After that, we went about our lives.  Of course I continued to be supportive as best friends would be.  But I couldn’t stand to watch her deteriorate in front of me like this.     At one point her condition had declined so much that at her health club (Mt. Auburn) where she had been a member of for 20 years, someone asked what was wrong.  About a day after I told the person at the front desk, the manager wrote back and said he was going to comp her membership for the rest of her life. Continue reading "My Own Story of ALS"

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